Living Well With ADTKD, by Evan Leong

Ever since I can remember, kidney disease has been a normal topic in our family. My

grandfather got his kidney transplant around the time I was born, and my mother got

hers over five years ago. It was always in the back of my mind that I could have kidney

disease too.

I started having gout at age 22 but always thought it was just gout and nothing more. It

drove me to get blood work done early in my adult life, so I have been able to look back

and see how my kidney numbers have slowly gotten worse over time. I did not pay

much attention to that at first because I still felt fine and was managing gout well.

ADPKD (Autosomal Dominant Polycystic Kidney Disease) has long been the presumed

culprit in our family, so an ultrasound in 2020 that came back clean gave me a false

positive that I was in the clear.

In 2024, a random high blood pressure reading prompted me to investigate further. My

nephrologist ordered a genetic test just in case, which turned out to be exactly what I

needed to get answers and begin my journey toward advancing research for a solution.

I have ADTKD-UMOD (Autosomal Dominant Tubulointerstitial Kidney Disease-

Uromodulin), and our family is now discovering that many of us actually have ADTKD

rather than ADPKD, with a couple of family members in my generation recently

diagnosed.

It is scary knowing I have a disease that is rare with no treatment; it’s more difficult

knowing I may have passed this on to my kids. It has forced me to stare death in the

face, and I am comforted knowing I have an outcome that is sure through the death and

resurrection of Jesus Christ. This deep comfort empowers me to actively participate in

advancing research through studies, helping to build a solution. For our children, I am

driven to support future research, and my wife is compelled to volunteer with The Rare

Kidney Disease Foundation in hopes to give them a better future.

My hope in my story is to share that it is possible to live without fear of ADTKD and to

live a long and fulfilling life. I have witnessed family members experience decline,

receive transplants, and face their final days. It can be challenging to live day-by-day

with a slow working disease and to know it is likely going to be the primary contributor to

the end of my life. Nevertheless, I am another in a long family legacy of facing this battle

with strength, and my hope is that I can be an example to my kids and to others of what

it looks like to live well with ADTKD.